Raising Awareness of Cluster Headache
In the last part of the interview with Bob Wold, we learn how his long road to a cluster headache diagnosis, and an even longer road to finally finding an effective treatment lead him down the path to forming Clusterbusters.org to raise more awareness for people living with cluster headache today.
What lead you to create Clusterbusters?
After I started treating myself and talking to other people online who found great success with LSD for cluster, I figured more people need to know about this. I started researching past research in treating cluster headaches. It seemed to me at that point all of the research dollars were going into devices or surgeries - deep brain stimulation was huge at the time (putting wires in the middle of people's brains). At the time, I believe there was a study in Germany where six people were given deep brain stimulation and one of the six people died. A couple of the people had partial success, others did not and when the study was wrapped up the report was that "Well only one person died and we think this deserves more research."
I thought you're putting millions of dollars into something that killed one person out of six. Why can’t we research these mushrooms where people are having success, there are no side effects, and people have been eating these for 3000 years and no one has died? They’re anti-addictive. When you take the mushrooms, you have to wait a couple of days to take them again because they actually aren’t effective without a break. The guy who formed alcoholics anonymous broke his alcoholism with LSD.
Making some noise at Harvard
This is what forced me to move ahead and try to improve the research fund focus. I was angry about all the money going toward the deep brain stimulation research so I formed Clusterbusters to try to get some research started. I approached Harvard to try to get a study started with psilocybin and cluster headaches. I figured Harvard would be a great place to go since a successful study there would put us years ahead of conducting the research anywhere else. Timothy Leary and LSD had given Harvard a bad name which lead to LSD being banned for 40 years.
The Clusterbusters study was the first time Harvard worked on LSD since this ban. Published in the American Academy of Neurology in 2006, this case study looked at 254 people with cluster headache being treated with psilocybin and LSD. Fifteen years later, the FDA agreed to a clinical study to treat cluster and migraine with psilocybin at Yale. The study is currently recruiting in 2019.
What do you wish others knew without cluster?
Women can have cluster headache
There are a lot of people who have been diagnosed with migraine who actually have cluster headaches. The more education we put out there on what a cluster headache is, the quicker people will get a proper diagnosis. Twenty years ago, the male to female ratio with clusters was 8:1. Almost every woman who is now diagnosed with cluster headaches used to be told "no you can't have cluster, you're a woman. Only men have cluster headaches."
Doctors need to be educated on cluster headache
Doctors are still saying this. We have to educate the doctors and the patients. Now it’s down to 2 and 3:1 male over female. We haven’t lost men we’ve added so many women to the cluster diagnosis group after being misdiagnosed previously. When I attend migraine conferences, I know looking at 200 migraine patients, 6 have them probably have cluster and don’t know it yet. It’s why I love going to these migraine conferences. The doctors giving half where they'll say the woman has cluster features but will diagnose the patient with "cluster migraine."
It is possible for people to have migraine and cluster?
Yes. They know when they have a cluster attack and know when they have a migraine attack. They’re usually not people with chronic migraine. If you ask someone with cluster to describe their headache, they’ll most likely use the word migraine as a starting point to make it relatable.
Any last messages you want to share about cluster headache?
- Migraine people who are misdiagnosed especially because they’re women. No one should be telling people they can’t have cluster because they’re a woman.
- Getting doctors to prescribe high flow oxygen for cluster headaches. If you have cluster headaches, you should be getting prescriptions for oxygen. Whether doc won’t write it, won’t write it high enough so patients don’t think it will work, or if insurance companies to cover it.
Have you shared your migraine story with us yet?